Scientific Societies
Society for the Study of Inborn Errors of Metabolism (SSIEM)
Society for Inherited Metabolic Disorders (SIMD)
International Society for Neonatal Screening (ISNS)
British Inherited Metabolic Disease Group (BIMDG)
European Study Group on Lysosomal Diseases (ESGLD)
European Working Group on Gaucher Disease (EWGGD)
Genetic Metabolic Dieticians International (GMDI)
Global Organization for Lysosomal Diseases (GOLD)
Organizations
European Union Committee of Experts on Rare Diseases (EUCERD)
Directorate General for Health and Consumer Affairs (DG SANCO)
International Rare Diseases Research Consortium (IRDiRC)
European Medicine Agency (EMA)
Committee for Orphan Medicinal Products (COMP)
International Conference on Rare Diseases and Orphan Drugs (ICORD)
Networks-DataBases
European Database of Rare Diseases (ORPHANET)
ERA-Net for Research Programs on Rare Diseases (E-Rare)
Metabolic Biochemistry Network (METBIONET)
Network for Genetic Metabolic Diseases Detectable by Newborn Screening (METABNET)
The Human Gene Mutation Database - HGMD
Human Metabolome Database - HMDB
European Platform for Rare Diseases Registries (EPIRARE)
Inherited Neurometabolic Diseases Information Network (INNERMED)
Patient Groups
European Rare Diseases Organization (EURORDIS)
National Organization for Rare Disorders (NORD)
European Society for Phenylketonuria and Allied Disorders treated as PKU (E.S.PKU)
Fabry Support and Information Group (FSIG)
European Gaucher Alliance (EGA)
Society for Mucopolysaccharide Diseases (MPS Society)
Children Living with Inherited Metabolic Diseases (CLIMB)
International Pompe Association (IPA)
Vaincre les Maladies Lysosomales (VML)
European Galactosaemia Society (EGS)
